Sunday, December 4, 2011

Autism and the World of Work

 When I first began working with people with autism professionally as a consultant at a state operated public institution in southern Minnesota in 1968, I met older staff members who spoke with fond reminiscence of the good old days, when the institution operated a basket weaving shop, a sewing establishment and a dairy farm in which residents worked.  In exchange for work, the residents were housed, provided with meals and minimal medical care, based on the poorhouse model of Victorian England (Wikipedia, 2011). In early Victorian times, poverty was seen as dishonorable caused by lack of moral virtue, i.e. industriousness.  The same pattern was used throughout the US.  People with disabilities unable to be competitively gainfully employed were viewed similarly. 
A Poorhouse in England
 In 1912 Creedmoor State Hospital opened in New York initially a farm colony of the Brooklyn State Hospital.  The "colony house" concept spread throughout the US as part of institutional agricultural development where residents raised food for consumption within the institution and also for sale outside to the surrounding communities. Examples of colony houses are Vineland in New Jersey and Howe Farm in Massachusetts. Within such colonies, men and women with developmental disabilities were kept strictly apart from the outside communities. 
Former Farm Colony Bldg at Austin State School, in Texas
But this practice didn't stop with the institutional reform movement in the 1950s.  In the late 1960s Thurman Johnson's ranch in the rolling hills near Goldthwaite Texas became a farm training and job placement service for men with intellectual disability. He taught the former state hospital residents how to raise turkeys and cows and perform other farm chores, then put them to work. He and his partner, Kenneth Henry, hired out the men as laborers at turkey processing plants in Iowa and other states.  The arrangement ended in February 2011 when Iowa authorities shut down a shabby bunkhouse where the last 21 men lived while working long hours in a nearby turkey processing plant.  They found cockroaches, boarded-up windows and exits, and a faulty boiler that forced the men to use space heaters to stay warm in the cold Iowa winter. Investigators concluded they were underpaying workers and possibly violating their civil rights. Iowa authorities notified owners that the business could face $900,000 in fines for improper payroll deductions and other alleged violations (Meyer, B, 2010).   It may come as a surprise to some, that the same type of program still exists today, but without the word “colony.” 
Food Preparation Training Beverly Farm
 I’m not suggesting all segregated residential and vocational programs are necessarily problematic.  Some residential farms seem to provide good services and a safe work environment, such as Beverly Farm in Godfrey, IL.   Frustrated parents have increasingly turned to developing their own private residential and day programs for their adult sons and daughters with autism, being dissatisfied with existing services. 

Alice G. Walton in Forbes wrote an ill-informed article about this trend in the November 30, 2011 on-line issue.  She cites Peter Bell of Autism Speaks who she says reported based on a 2009 survey,  “The unemployment rate for autistic people seems to be about 66%, compared to about 9% for the general population.”  While this is correct, it is very misleading. The comparison seems to assume that people with autism in general are comparably capable to their typical peers.  A more apt comparison is unemployment rates for people with developmental disabilities, which is the same as autism, 67%.  Some of the reasons for unemployment are similar, while others differ.

 Alice Watson states: “Part of the problem is that most educational and vocational programs for the under-21 group are state-run.” It isn’t at all clear why it is problematic that educational and vocational services are provided by public schools, unless Ms. Walton is suggested all of education should be privatized.  All of the advocates who have spent the last 30 years attempting to improve educational services for young people with autism will be shocked at this criticism.   

Many of vocational programs during high school transition are actually privately run, either as non-profit or for-profit agencies in collaboration with public schools.  Citing Peter Bell of Autism Speaks, Walton reports that he says, that a lot of times “our people are actually underemployed, either because the jobs themselves are aren’t challenging enough, and their social skills may make it difficult.”  The latter is clearly true; the former is seldom the case.  People with autism rarely have employment problems because the job isn’t challenging. This is an unproductive illusion. The problems are nearly always social, communication and other behavioral challenges.  Any employee, who have difficulty with communication, is intolerant of changes in routine or has emotional outbursts, is difficult to accommodate in many workplaces.

Ms. Walton reports in Forbes, “and some families are taking matters into their own hands. This past summer, Wendy Kaplan has started a vegetable farm in Oyster Bay, NY, cultivated by people with autism…. Kaplan now hopes to establish a permanent farm where people with autism can live, work, and be independent.”  

If this all sounds familiar, that's because it is.  We’ve heard this song before, now substituting for profit enterprises for non-profit or state operated programs.  The first place profit making companies make cuts to assure their profit margin is in employee wages and associated supervisory costs.  By definition, people with autism will generally require more supervisor costs, especially during initial transition, but they will also tend to require more ongoing guidance.  Since a for profit business’s motives are often incompatible with accommodating the needs of people with autism, the result is likely to be worse than for a non-profit or publically run organization whose priority is clearly the welfare of the client. 

Beautician Assistant Training, Autism Community, Inc,
The need for more adequate training of young adults with ASDs for the workplace is unquestioned. Partnering with the right kinds of businesses makes a great deal of sense.  It is essential in so-doing, we bear in mind the strengths and weaknesses the individual brings to the potential job situation, which vary greatly from person to person.  Common Strengths: attention to detail, reliability, conscientious, seldom tardy, 10-15% people with Asperger and HFA have normal or above normal intellectual functioning, tolerance for repetition, and good visual spatial skills. Common Weaknesses:  difficulty with frequent social interactions, resistance to following directions, communication limitations, intolerance for necessary changes, possible repetitive non-functional behavior, below average intellectual functioning for about 60-70%, and possible outbursts.  Parents and others do not do a young adult with autism any favor by only attending to the strengths and ignoring the possible limitations of the potential employee.  It is very counterproductive for parents to imagine that every person with an ASD is a budding Bill Gates.  Matching the would-be employee’s strengths with the job characteristics (including social and intellectual demands) and thorough training of job supervisors and employers, are essential in increasing the successfull employment of young adults with autism.

Finally, there are great advantages of encouraging people with autism to live and work in the community surrounded by their families or neighbors with no known disabilities with appropriate support services. An example is Community Connections Partnership in St. Paul, Minnesota, which specializes, in providing vocational and other services to individuals with autism in the community. Opportunities for normative daily activities often do not exist in segregated settings, which tends to promote isolation and non-functional repetitive routines, like hours of playing video games or rocking and watching television. While parents who establish such programs are unquestionably well intentioned, the profit-making company that runs such an organization in the future may not be so inclined, as happened with the Texas turkey farm. 

Participating in ordinary daily community activities like going shopping, visiting community events, taking part in integrated group sports, arts, music and outdoor activities are enriching for people with autism just like everyone else. Why would one choose to knowingly deny them those opportunities? It is understandable concerned parents want to protect their kids as young adults as long as possible, but this approach isn't necessary as a means of providing a valued future for their adult children with autism spectrum disorders.

In closing, the headline of Alice Walton's article, "Living Life With Autism: Has Anything Really Changed?" is patently absurd to anyone who has been involved in the autism field over the past 30 years.


Community Connections Partnership

Meyer, Bill (2010) Texas farm that employed, hired out mentally disabled men for decades face more scrutiny. Cleveland Plain Dealer, Wednesday, June 10, 2009,

Poor House,; Nov. 30, 2011 [In early Victorian times poverty was seen as a dishonorable state caused by a lack of the moral virtue of industriousness. As was depicted by Charles Dickens, a workhouse could resemble a reformatory and house children, either with families or alone, or a penal labor regime to give the poor work at manual labor and subject them to physical punishment.  In the US poor farms were county or town-run residences where paupers (mainly elderly and disabled people) were supported at public expense. They were common in the United States beginning in the middle of the 19th century and declined in use after the Social Security Act took effect in 1935 with most disappearing completely by about 1950.]

Smith, FA & Gilmore, DS. Data Note 10, 2007, Institute for Community Inclusion, Unmasks Boston.

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